Stem cell specialists are warning of the dangers of medical tourism, saying unproven stem cell therapy overseas could leave patients worse off.
For many people with conditions like spinal injury, multiple sclerosis, motor neuron or Parkinson's disease, signing up for clinically unproven, overseas stem cell therapy is worth the risk.
But earlier this year, a medical journal reported a case of an Israeli teenager who developed brain tumours after experimental injections at a Russian clinic.
There have also been reports of patients contracting meningitis after treatments in China.
The Australian Stem Cell Centre will be releasing a handbook next month to help patients analyse radial stem cell treatments abroad.
Bill's story
Bill Boras from Melbourne was left a quadriplegic after a car accident in 2002. The 36-year-old, who used to enjoy adventure sports, was confined to a wheelchair which he controlled with his chin.
In a bid to regain some movement, he signed up for radical stem cell therapy in China which uses cells from aborted foetuses to repair damaged spinal cord tissue.
"[The therapy] improved me... with a bit of therapy I came back and changed my wheelchair to a manual wheelchair and I'm driving it basically now," he said.
Mr Boras says he is now planning on a course of stem cell injections in Hong Kong next year to increase sensation in his body.
His only information on it comes from the clinic's website, but with similar treatments years off from even pre-clinical trials in Australia, he says he does not see an alternative.
"It's not easy sitting down and being taken care of 24/7, not easy at all," he said.
"I don't know if more harm can come to what I am at the moment, I can only hope it comes out good."
Risky treatments
But stem cell experts are warning patients against taking the risk with radical treatments abroad.
Australian Stem Cell Centre clinical adviser Dr Kirsten Herbert says in a study of seven patients with spinal cord injuries who had stem cell treatment in China, three contracted meningitis - one with serious complications.
And Dr Herbert says cancer is a rare but possible side effect of the experimental therapy.
She cites a case of a 13-year-old Israeli boy, taken to Moscow for treatment involving the injection of foetal neural cells into his brain and spinal cord.
"He had two treatments in 2002 and 2004 but then in 2005, he developed brain tumours at both sites of injections - one in his brain and one down at the base of his spinal cord," she said.
"So it's the first in the literature that really definitively showed that tumour growth could be possible from stem cell treatments."
Dr Herbert is urging anyone considering unproven treatments to first be armed with information and questions.
"We have concerns about the use of bovine products, or products from cows being used in stem culture methods which then may increase the risk of acquiring a disease like Creutzfeldt-Jakob disease, which is also known as mad cow disease. And then are those cells tested?" she said.
"What viruses could potentially have infected those cells? HIV, Hepatitis B, Hepatitis C and some of the other related viruses? And also have those cells been tested for their capacity to form tumours?"
Hidden extras
She says questions must also be asked about hidden costs, medications, post-operative support and whether the clinic has published any data.
Dr Herbert is urging people to be wary of international clinics that rely on fancy websites and individual testimonials.
"If their main claim to success if through patient testimonials rather than published data, that raises key questions about why have they not published these results," she said.
"Because essentially it is perfectly easy to make uncorroborated claims on the internet and individual patient testimonials, as exciting as they may sound, can't be proven or disproven."
The Australian Stem Cell Centre will be releasing a patient handbook next month to help people analyse overseas stem cell treatments.
Patient advocacy groups have met in Canberra to discuss Australia's clinical trials, government funding and how to protect people from being emotionally and financially exploited.
Dr Herbert says the numbers of inquiries into radial overseas treatments are rising, but says that is not necessarily a bad thing.
"I'm actually heartened by the number of people who are asking, because I think it illustrates how well informed patients are and that a lot of them carry a healthy level of cynicism that they would even ask," she said.
"Whereas stem cell therapy holds huge promise and clinical trials are ongoing under very controlled circumstances, we need to proceed with the appropriate level of caution so that unforeseen complications happen as rarely as possible."
Tuesday, November 24, 2009
New options for Parkinson's treatment
By: Kerstin Kealy, WDAY
Patients with Parkinson’s here in the Valley have a new option for treatment. MeritCare has started the L-S-V-T Big program and just a few months in, it's making a big difference in the lives of patients. Last night, our friend, former WDAY Anchor Marv Bossart shared his courageous story as he battles this difficult disease. Tonight, how Big and the L-S-V-T Loud program are giving Marv back and others like him what Parkinson's threatens to steal away.
As a News Anchor for 42 years, Marv Bossart was known for his voice. 7 years after a diagnosis of Parkinson’s, he is fighting to keep it.
“I hate the fact that my voice is fading, I made my living on my voice.”
He's among 89% of those with Parkinson’s who have problems with speech.
“His biggest complaint coming in to see me was that he was losing himself in crowds in people and not being heard and not understanding that.”
The Loud program is an intensive month long speech therapy that recalibrates your brain, teaching you to think loud and talk loud. It's showing dramatic results.
“You can see in one day, day one progress.”
From Loud to Big, Marv re-learns what many of us take for granted. Things like getting up from a chair, reaching, and walking.
“Marv has one of the best attitudes I’ve ever seen.”
Since the program started at MeritCare in May, Physical Therapist Laura Guse has used big to help Parkinson’s patients walk faster with bigger steps and have better balance, a serious safety issue for those with Parkinson’s.
“I was getting along just fine and one day all of a sudden I fell in our driveway and I fell hard.”
Laura says the results from big have shown twice the improvement for Parkinson’s patients than traditional physical therapy.
“They really feel empowered over their disease and they have a lot more confidence in the way that they move, they feel less fearful of falling.”
Marv's doctor, MeritCare Neurologist Dr. Tanya Harlow, says up to 70 percent of her patients here at NRI have Parkinson's.
“I could spend my entire time as a physician just seeing Parkinson’s disease because there are that any patients.”
She and Marv talked about another option for treatment, deep brain stimulation, but Marv decided it wasn't worth the risks, instead opting for physical therapy and medication.
“He’s becoming more advanced as far as his Parkinson’s disease goes so the motor complications I mentioned before as far as the dyskinesias are starting to become more problematic for him.”
Dr. Harlow says the key to one day curing this brain disorder is figure out what causes it. Something she is hopeful will happen in the next decade.
“I think it's going to be a breakthrough. There's so much research going in I’m hoping it's going to be sooner rather than later.
For now the key to fighting this disease, something Marv knows well, staying active.
“I’m not going to give up without a fight of some kind.”
Patients with Parkinson’s here in the Valley have a new option for treatment. MeritCare has started the L-S-V-T Big program and just a few months in, it's making a big difference in the lives of patients. Last night, our friend, former WDAY Anchor Marv Bossart shared his courageous story as he battles this difficult disease. Tonight, how Big and the L-S-V-T Loud program are giving Marv back and others like him what Parkinson's threatens to steal away.
As a News Anchor for 42 years, Marv Bossart was known for his voice. 7 years after a diagnosis of Parkinson’s, he is fighting to keep it.
“I hate the fact that my voice is fading, I made my living on my voice.”
He's among 89% of those with Parkinson’s who have problems with speech.
“His biggest complaint coming in to see me was that he was losing himself in crowds in people and not being heard and not understanding that.”
The Loud program is an intensive month long speech therapy that recalibrates your brain, teaching you to think loud and talk loud. It's showing dramatic results.
“You can see in one day, day one progress.”
From Loud to Big, Marv re-learns what many of us take for granted. Things like getting up from a chair, reaching, and walking.
“Marv has one of the best attitudes I’ve ever seen.”
Since the program started at MeritCare in May, Physical Therapist Laura Guse has used big to help Parkinson’s patients walk faster with bigger steps and have better balance, a serious safety issue for those with Parkinson’s.
“I was getting along just fine and one day all of a sudden I fell in our driveway and I fell hard.”
Laura says the results from big have shown twice the improvement for Parkinson’s patients than traditional physical therapy.
“They really feel empowered over their disease and they have a lot more confidence in the way that they move, they feel less fearful of falling.”
Marv's doctor, MeritCare Neurologist Dr. Tanya Harlow, says up to 70 percent of her patients here at NRI have Parkinson's.
“I could spend my entire time as a physician just seeing Parkinson’s disease because there are that any patients.”
She and Marv talked about another option for treatment, deep brain stimulation, but Marv decided it wasn't worth the risks, instead opting for physical therapy and medication.
“He’s becoming more advanced as far as his Parkinson’s disease goes so the motor complications I mentioned before as far as the dyskinesias are starting to become more problematic for him.”
Dr. Harlow says the key to one day curing this brain disorder is figure out what causes it. Something she is hopeful will happen in the next decade.
“I think it's going to be a breakthrough. There's so much research going in I’m hoping it's going to be sooner rather than later.
For now the key to fighting this disease, something Marv knows well, staying active.
“I’m not going to give up without a fight of some kind.”
Sunday, November 22, 2009
Lonnie Ali Shares A Parkinson's Disease Caregiver's point of view
Hope that floats like a butterfly
Lonnie Ali was six years old and had just gotten home from school in Louisville, Kentucky, when she saw a crowd of boys gathered around a handsome young man in a white shirt, a bow tie, and black dress pants. “Look,” said her mother, standing in the doorway, “that’s Cassius Clay.”
Clay, who would soon claim the first of three heavyweight boxing titles and adopt the Muslim name Muhammad Ali, made a point of calling the shy little girl over. And from then on, she recalls, whenever he visited his mother across the street, he stopped by her house as well. “He was like a big brother,” she says. “He’d sit and talk, and I’d believe what he said before I’d believe my father. I figured my father would tell me stuff just because he wanted to protect me, but Muhammad would tell it to me the way it was.”
They remained friends, even as he became a world champion and she went off to college, where she got a psychology degree and then an MBA. When she was 17, Lonnie says, she realized that she would marry him someday—“I knew it was fate,” she says. Twelve years later, she did, becoming the boxer’s fourth wife. Muhammad had recently been diagnosed with Parkinson’s disease, but the diagnosis didn’t faze Lonnie. “I knew the man, not the celebrity,” she says. “That’s who I loved. And he knew I would always be in his corner.”
For a long time, Muhammad’s disease barely slowed him down. Lonnie was more of a care partner than caregiver, nudging her husband to take his medicine and accompanying him to doctors’ appointments. But gradually, his symptoms became more intrusive. One turning point occurred about 15 years ago, when the couple were out to dinner in Boston. “Muhammad went to put food in his mouth and he froze,” she recalls—temporary immobility is characteristic of the disease. Another was when the famously animated boxer became stone-faced, also a classic sign of the disease. “Then I knew I had some challenges that I really needed to deal with and learn about,” Lonnie says.
The challenges have been practical, emotional, and psychological as much as medical. Lonnie has had to recognize her own limitations: At one point five years ago, as she cared for her husband, mothered their teenage son, Asaad, and ran a business, among other things, she felt so unfocused, she thought she had attention deficit disorder. “I went to the doctor and fell asleep in the waiting room,” she says. “The doctor said, ‘You don’t have ADD. You’re sleep-deprived.’”
She’s also had to learn to accept what she can’t control. Muhammad is still a big man, with piercing eyes and muscular arms, the result of working out every day. But his disease means that this man of unparalleled physical gifts now walks haltingly; once famous for his banter, he often sits in silence. “I’ve been with him for so long, I can basically look at him and tell what he wants and needs,” Lonnie says.
Yet the illness can steal only so much, and Muhammad still has plenty he wants to do. A quarter of a century into his struggle with Parkinson’s disease, he’s taking piano lessons. Most important, this lifelong supporter of humanitarian causes still feels he has a mission to help other people. Early in his disease, Muhammad shied away from the spotlight. “He used to play to the camera, but the camera was no longer his friend,” Lonnie says. But then he made an appearance with Michael J. Fox, also a Parkinson’s sufferer, who has been open about his own movement problems. “I think he thought, If Michael can do it, I can do it.”
Now Muhammad Ali doesn’t care what people think when they see him. Early this year, in an essay for National Public Radio’s “This I Believe,” the boxing legend wrote about carrying the Olympic torch to light the cauldron at the 1996 Summer Games in Atlanta and realizing that his tremors had taken over. “I heard a rumble in the stadium that became a pounding roar and then turned into a deafening applause,” he wrote. He understood then that Parkinson’s had not defeated him.
“There’s still a lot for me to learn from him, and I never forget that,” Lonnie Ali says. “Muhammad was the epitome of strength and beauty, but could someone with physical challenges really relate to him? Probably not. But now they can identify with him. We used to get letters all the time about people with Parkinson’s who wouldn’t go out of the house, but because they saw Muhammad out, now they go out.
“He still has that power to inspire people—without even opening his mouth.”
Lonnie Ali was six years old and had just gotten home from school in Louisville, Kentucky, when she saw a crowd of boys gathered around a handsome young man in a white shirt, a bow tie, and black dress pants. “Look,” said her mother, standing in the doorway, “that’s Cassius Clay.”
Clay, who would soon claim the first of three heavyweight boxing titles and adopt the Muslim name Muhammad Ali, made a point of calling the shy little girl over. And from then on, she recalls, whenever he visited his mother across the street, he stopped by her house as well. “He was like a big brother,” she says. “He’d sit and talk, and I’d believe what he said before I’d believe my father. I figured my father would tell me stuff just because he wanted to protect me, but Muhammad would tell it to me the way it was.”
They remained friends, even as he became a world champion and she went off to college, where she got a psychology degree and then an MBA. When she was 17, Lonnie says, she realized that she would marry him someday—“I knew it was fate,” she says. Twelve years later, she did, becoming the boxer’s fourth wife. Muhammad had recently been diagnosed with Parkinson’s disease, but the diagnosis didn’t faze Lonnie. “I knew the man, not the celebrity,” she says. “That’s who I loved. And he knew I would always be in his corner.”
For a long time, Muhammad’s disease barely slowed him down. Lonnie was more of a care partner than caregiver, nudging her husband to take his medicine and accompanying him to doctors’ appointments. But gradually, his symptoms became more intrusive. One turning point occurred about 15 years ago, when the couple were out to dinner in Boston. “Muhammad went to put food in his mouth and he froze,” she recalls—temporary immobility is characteristic of the disease. Another was when the famously animated boxer became stone-faced, also a classic sign of the disease. “Then I knew I had some challenges that I really needed to deal with and learn about,” Lonnie says.
The challenges have been practical, emotional, and psychological as much as medical. Lonnie has had to recognize her own limitations: At one point five years ago, as she cared for her husband, mothered their teenage son, Asaad, and ran a business, among other things, she felt so unfocused, she thought she had attention deficit disorder. “I went to the doctor and fell asleep in the waiting room,” she says. “The doctor said, ‘You don’t have ADD. You’re sleep-deprived.’”
She’s also had to learn to accept what she can’t control. Muhammad is still a big man, with piercing eyes and muscular arms, the result of working out every day. But his disease means that this man of unparalleled physical gifts now walks haltingly; once famous for his banter, he often sits in silence. “I’ve been with him for so long, I can basically look at him and tell what he wants and needs,” Lonnie says.
Yet the illness can steal only so much, and Muhammad still has plenty he wants to do. A quarter of a century into his struggle with Parkinson’s disease, he’s taking piano lessons. Most important, this lifelong supporter of humanitarian causes still feels he has a mission to help other people. Early in his disease, Muhammad shied away from the spotlight. “He used to play to the camera, but the camera was no longer his friend,” Lonnie says. But then he made an appearance with Michael J. Fox, also a Parkinson’s sufferer, who has been open about his own movement problems. “I think he thought, If Michael can do it, I can do it.”
Now Muhammad Ali doesn’t care what people think when they see him. Early this year, in an essay for National Public Radio’s “This I Believe,” the boxing legend wrote about carrying the Olympic torch to light the cauldron at the 1996 Summer Games in Atlanta and realizing that his tremors had taken over. “I heard a rumble in the stadium that became a pounding roar and then turned into a deafening applause,” he wrote. He understood then that Parkinson’s had not defeated him.
“There’s still a lot for me to learn from him, and I never forget that,” Lonnie Ali says. “Muhammad was the epitome of strength and beauty, but could someone with physical challenges really relate to him? Probably not. But now they can identify with him. We used to get letters all the time about people with Parkinson’s who wouldn’t go out of the house, but because they saw Muhammad out, now they go out.
“He still has that power to inspire people—without even opening his mouth.”
Friday, November 20, 2009
City chosen to trial new project for people with Parkinson's
DERBY has been chosen as one of just three places in the country to trial a new project to help people with Parkinson's disease.
Patients at Royal Derby Hospital will take part in a six-week scheme to help them get more involved in managing their condition.
The feedback given by them and medics in the city will be used to develop the programme for national use.
Derby has been chosen because the city's hospitals were last year named as a Parkinson's Disease Centre of Excellence by the USA's National Parkinson Foundation, in recognition of their research, care, education and outreach services for patients.
During the pilot, around 40 patients will be asked to assess changes in their health by monitoring the quality of their sleep, mood and diet, and how long it takes them to complete everyday activities.
Parkinson's disease is a disorder of the nervous system that causes tremors, slow movement and stiffness of muscles.
The pilot, which will also run in Hull and Southampton, is set to take place in January, before being extended across the country by June.
National charity The Cure Parkinson's Trust, which is behind the scheme, hopes it will help patients better understand their condition by recognising areas of everyday life which are affected by it.
A spokeswoman for the charity said a recent survey carried out on behalf of the charity highlighted the importance of the programme.
She said: "Parkinson's disease is a complex, highly individual disorder of the nervous system with a wide range of symptoms that can vary from day to day.
"A person with Parkinson's can give valuable insights to help healthcare professionals.
"The survey found that two-thirds of people with Parkinson's want more involvement in their appointments and 70% said that a resource to help them prepare for those appointments would be useful."
Sheila North, chairman of Derby Parkinson's Disease Society, highlighted a potential problem with the idea.
She said: "It can be very difficult to be objective about one's own abilities.
"I hope the research has a mechanism for an objective assessor to validate the forms."
But Derby nurse Lisa Brown, a specialist in Parkinson's disease, said she was sure the tool would improve the quality of care received by patients.
She said: "This will give us a picture of how they are doing in their day-to-day life and how the disease is affecting them."
Patients at Royal Derby Hospital will take part in a six-week scheme to help them get more involved in managing their condition.
The feedback given by them and medics in the city will be used to develop the programme for national use.
Derby has been chosen because the city's hospitals were last year named as a Parkinson's Disease Centre of Excellence by the USA's National Parkinson Foundation, in recognition of their research, care, education and outreach services for patients.
During the pilot, around 40 patients will be asked to assess changes in their health by monitoring the quality of their sleep, mood and diet, and how long it takes them to complete everyday activities.
Parkinson's disease is a disorder of the nervous system that causes tremors, slow movement and stiffness of muscles.
The pilot, which will also run in Hull and Southampton, is set to take place in January, before being extended across the country by June.
National charity The Cure Parkinson's Trust, which is behind the scheme, hopes it will help patients better understand their condition by recognising areas of everyday life which are affected by it.
A spokeswoman for the charity said a recent survey carried out on behalf of the charity highlighted the importance of the programme.
She said: "Parkinson's disease is a complex, highly individual disorder of the nervous system with a wide range of symptoms that can vary from day to day.
"A person with Parkinson's can give valuable insights to help healthcare professionals.
"The survey found that two-thirds of people with Parkinson's want more involvement in their appointments and 70% said that a resource to help them prepare for those appointments would be useful."
Sheila North, chairman of Derby Parkinson's Disease Society, highlighted a potential problem with the idea.
She said: "It can be very difficult to be objective about one's own abilities.
"I hope the research has a mechanism for an objective assessor to validate the forms."
But Derby nurse Lisa Brown, a specialist in Parkinson's disease, said she was sure the tool would improve the quality of care received by patients.
She said: "This will give us a picture of how they are doing in their day-to-day life and how the disease is affecting them."
Thursday, November 19, 2009
Did Hitler have Parkinson's disease? Danbury doctor thinks so
By Robert Miller
By the end of his life, Adolf Hitler had a pronounced tremor in his hands -- especially his left hand. In his military decisions, he'd become blindly inflexible, unable to base his decisions on the reality of the situation in the field.
Which raises a question that lies somewhere between history and medical diagnosis: Did Hitler have Parkinson's disease? And if he did, did the illness play a part in the end of World War II?
Dr. John Murphy, executive vice president of Danbury Hospital, has looked at photos and eyewitness accounts. He's taken that evidence and connected it with his own experience as a neurologist who has many patients with Parkinson's.
And he's come to a conclusion -- yes, Hitler did have the disease and, yes, it played a part in history.
"It is a little bit off the wall," Murphy said to a packed crowd at a talk last month at Founder's Hall here.
Murphy said Dr. Abraham Lieberman, one of the giants in the study of Parkinson's disease, was the person who first raised the issue when Murphy worked with him.
"He said to me casually, had I ever heard that Hitler had Parkinson's?'' Murphy said. "I asked him if he was reading the National Enquirer. And he said, 'What? Don't you believe me?' ''
Lieberman and Murphy then made a bet. Murphy would study the evidence to see if Lieberman was right.
"After years of reading, I lost the bet,'' Murphy said. "He convinced me. The more I looked to see that Hitler didn't have Parkinson's disease, the more I learned he did."
Murphy said some of the symptoms of Parkinson's disease -- a progressive, degenerative disorder of the nervous system -- are easy to recognize. They include a tremor that gets worse over time, usually starting on one side of the body and spreading to the other.
Parkinson's can also include a slow gait, stooped posture, a voice reduced to a whisper, and a dull stare that does not seem to focus on its surroundings.
Those suffering from Parkinson's can also suffer from cognitive disorders that include a lack of imagination and spontaneity, difficulty making decisions and general apathy.
And, Murphy said, that description fits Hitler in his final years.
Using photos and bits of old newsreels, Murphy showed that Hitler in the 1930s was a voracious orator who freely used both arms while making speeches. In the opening years of the war, he was also willing to let his generals take military gambles. But as the war progressed, Hitler became a different man.
Newsreel footage shows that by 1940, Hitler never used his left hand, which was shaking badly. Instead, he left it hanging by his side or hooked his thumb into his belt. One small bit of footage, however, shows Hitler talking to troops and forgetting to hide the tremors.
"That's a Parkinson's tremor,'' Murphy said, showing the film clip to those who attended the Founder's Hall lecture. "I've seen it a thousand times.''
Hitler's entourage wrote in their memoirs that he walked slowly by the war's end. His voice was reduced to a whisper and both hands shook. He was bent over and shuffling. In his 50s, he looked like a man two or three decades older.
"Hitler's left hand trembled and he had a stooped and rigid posture," wrote Gen. Heinz Gudarian, one of Hitler's generals. An intelligence officer, Gustave Boldt, also wrote of Hitler's tremors and shuffling walk. An SS officer wrote that Hitler in 1945 "had become an old man,'' his voice a whisper.
Murphy also said handwriting analysis shows that as the war progressed, Hitler's handwriting became small and cramped -- another symptom of Parkinson's patients.
By war's end, Murphy added, Hitler had become a liability to his soldiers, ordering them always to advance and hold their position, even when they were outnumbered and surrounded.
His miscalculations about the Allied landings on D-Day may have helped the invasion succeed.
"He stubbornly insisted on holding positions at all costs,'' Murphy said.
The root cause of Hitler's Parkinson's disease may have been a condition know as Von Economo's encephalitis, a swelling of the brain that can occur after a severe infection, Murphy said.
That infection could have been the great 1918 influenza epidemic, which killed 50 million people.
Murphy said that some of the personality changes attributed to Von Economo's encephalitis include obsessiveness, compulsions and a sort of "moral imbecility" that cannot discern good from evil. It also is linked to higher rates of Parkinson's disease.
That, Murphy said, presents a paradox.
"The illness Hitler had both created, and then defeated, the most criminal mind of our times."
By the end of his life, Adolf Hitler had a pronounced tremor in his hands -- especially his left hand. In his military decisions, he'd become blindly inflexible, unable to base his decisions on the reality of the situation in the field.
Which raises a question that lies somewhere between history and medical diagnosis: Did Hitler have Parkinson's disease? And if he did, did the illness play a part in the end of World War II?
Dr. John Murphy, executive vice president of Danbury Hospital, has looked at photos and eyewitness accounts. He's taken that evidence and connected it with his own experience as a neurologist who has many patients with Parkinson's.
And he's come to a conclusion -- yes, Hitler did have the disease and, yes, it played a part in history.
"It is a little bit off the wall," Murphy said to a packed crowd at a talk last month at Founder's Hall here.
Murphy said Dr. Abraham Lieberman, one of the giants in the study of Parkinson's disease, was the person who first raised the issue when Murphy worked with him.
"He said to me casually, had I ever heard that Hitler had Parkinson's?'' Murphy said. "I asked him if he was reading the National Enquirer. And he said, 'What? Don't you believe me?' ''
Lieberman and Murphy then made a bet. Murphy would study the evidence to see if Lieberman was right.
"After years of reading, I lost the bet,'' Murphy said. "He convinced me. The more I looked to see that Hitler didn't have Parkinson's disease, the more I learned he did."
Murphy said some of the symptoms of Parkinson's disease -- a progressive, degenerative disorder of the nervous system -- are easy to recognize. They include a tremor that gets worse over time, usually starting on one side of the body and spreading to the other.
Parkinson's can also include a slow gait, stooped posture, a voice reduced to a whisper, and a dull stare that does not seem to focus on its surroundings.
Those suffering from Parkinson's can also suffer from cognitive disorders that include a lack of imagination and spontaneity, difficulty making decisions and general apathy.
And, Murphy said, that description fits Hitler in his final years.
Using photos and bits of old newsreels, Murphy showed that Hitler in the 1930s was a voracious orator who freely used both arms while making speeches. In the opening years of the war, he was also willing to let his generals take military gambles. But as the war progressed, Hitler became a different man.
Newsreel footage shows that by 1940, Hitler never used his left hand, which was shaking badly. Instead, he left it hanging by his side or hooked his thumb into his belt. One small bit of footage, however, shows Hitler talking to troops and forgetting to hide the tremors.
"That's a Parkinson's tremor,'' Murphy said, showing the film clip to those who attended the Founder's Hall lecture. "I've seen it a thousand times.''
Hitler's entourage wrote in their memoirs that he walked slowly by the war's end. His voice was reduced to a whisper and both hands shook. He was bent over and shuffling. In his 50s, he looked like a man two or three decades older.
"Hitler's left hand trembled and he had a stooped and rigid posture," wrote Gen. Heinz Gudarian, one of Hitler's generals. An intelligence officer, Gustave Boldt, also wrote of Hitler's tremors and shuffling walk. An SS officer wrote that Hitler in 1945 "had become an old man,'' his voice a whisper.
Murphy also said handwriting analysis shows that as the war progressed, Hitler's handwriting became small and cramped -- another symptom of Parkinson's patients.
By war's end, Murphy added, Hitler had become a liability to his soldiers, ordering them always to advance and hold their position, even when they were outnumbered and surrounded.
His miscalculations about the Allied landings on D-Day may have helped the invasion succeed.
"He stubbornly insisted on holding positions at all costs,'' Murphy said.
The root cause of Hitler's Parkinson's disease may have been a condition know as Von Economo's encephalitis, a swelling of the brain that can occur after a severe infection, Murphy said.
That infection could have been the great 1918 influenza epidemic, which killed 50 million people.
Murphy said that some of the personality changes attributed to Von Economo's encephalitis include obsessiveness, compulsions and a sort of "moral imbecility" that cannot discern good from evil. It also is linked to higher rates of Parkinson's disease.
That, Murphy said, presents a paradox.
"The illness Hitler had both created, and then defeated, the most criminal mind of our times."
Wednesday, November 18, 2009
Café serves support for Parkinson’s
By Dan Goldman
About four years ago, Pittsford resident Brad Schramek was diagnosed with Parkinson’s disease.
Soon after, he and his wife, Lynn, began attending support groups through the Parkinson’s Support Group of Upstate New York (PSGUNY).
“We get ideas from people in the group of what helps, be it an exercise or a different medication, different things that are helping them (with Parkinson’s),” Brad said.
Lynn started the Parkinson Café in October, hoping to serve an unmet need. The group offers regular social interaction during the winter months.
“By bringing these people together, they will enrich each other’s lives,” Lynn said. “We’re going to keep the Parkinson Café really upbeat. People can come and interact with other people who will totally accept the limitations and physical challenges they’re facing and understand and support them.”
According to the National Parkinson Foundation, Parkinson’s disease is a brain disorder that occurs when certain nerve cells in part of the brain become impaired. The loss of nerves causes a loss of dopamine — a neurotransmitter that the nerve cells produce — which results in friction in the body’s muscle coordination. Symptoms like shaking, slowness of movement and difficulty with balance are a result of the dopamine loss.
Brad, 48, left his position as vice president of human resources at Monro Muffler.
“I couldn’t multi-task,” he said. “It got to the point that answering the phone and working on the computer was a very difficult thing to do.”
Lynn is the PSGUNY’s vice president of communications. Brad was its vice president of strategic planning, but he recently resigned.
“We realized how much we were benefiting from our involvement in the group, and so much of our lives became devoted to living with Parkinson’s that it became a productive way to channel my creative talent,” Lynn said.
There were 26 Café events scheduled to run between October and April.
Webster resident Linda Lee was diagnosed with Parkinson’s one year ago. She has attended some of the Café events already, including exercise classes at Lifetime Care and a trip to the Strong National Museum of Play.
“It does take away the feeling of isolation,” Lee said. “This was my first time meeting another person with the disease.”
She said the Parkinson Café is a great idea, and she is grateful to Lynn and Brad for starting it.
“We toured the butterfly garden (at Strong), and, as Lynn pointed out, the butterfly is our symbol of hope,” Lee said. “I like to think that we too, like the butterfly, can emerge from our cocoon of immobility and isolation and interact and share with others and have wings to fly.”
Lynn created the Parkinson Café to provide a comfortable place for those affected by Parkinson’s disease and their families to spend time together.
About four years ago, Pittsford resident Brad Schramek was diagnosed with Parkinson’s disease.
Soon after, he and his wife, Lynn, began attending support groups through the Parkinson’s Support Group of Upstate New York (PSGUNY).
“We get ideas from people in the group of what helps, be it an exercise or a different medication, different things that are helping them (with Parkinson’s),” Brad said.
Lynn started the Parkinson Café in October, hoping to serve an unmet need. The group offers regular social interaction during the winter months.
“By bringing these people together, they will enrich each other’s lives,” Lynn said. “We’re going to keep the Parkinson Café really upbeat. People can come and interact with other people who will totally accept the limitations and physical challenges they’re facing and understand and support them.”
According to the National Parkinson Foundation, Parkinson’s disease is a brain disorder that occurs when certain nerve cells in part of the brain become impaired. The loss of nerves causes a loss of dopamine — a neurotransmitter that the nerve cells produce — which results in friction in the body’s muscle coordination. Symptoms like shaking, slowness of movement and difficulty with balance are a result of the dopamine loss.
Brad, 48, left his position as vice president of human resources at Monro Muffler.
“I couldn’t multi-task,” he said. “It got to the point that answering the phone and working on the computer was a very difficult thing to do.”
Lynn is the PSGUNY’s vice president of communications. Brad was its vice president of strategic planning, but he recently resigned.
“We realized how much we were benefiting from our involvement in the group, and so much of our lives became devoted to living with Parkinson’s that it became a productive way to channel my creative talent,” Lynn said.
There were 26 Café events scheduled to run between October and April.
Webster resident Linda Lee was diagnosed with Parkinson’s one year ago. She has attended some of the Café events already, including exercise classes at Lifetime Care and a trip to the Strong National Museum of Play.
“It does take away the feeling of isolation,” Lee said. “This was my first time meeting another person with the disease.”
She said the Parkinson Café is a great idea, and she is grateful to Lynn and Brad for starting it.
“We toured the butterfly garden (at Strong), and, as Lynn pointed out, the butterfly is our symbol of hope,” Lee said. “I like to think that we too, like the butterfly, can emerge from our cocoon of immobility and isolation and interact and share with others and have wings to fly.”
Lynn created the Parkinson Café to provide a comfortable place for those affected by Parkinson’s disease and their families to spend time together.
Tuesday, November 17, 2009
High Tech Visual Feedback Device Dramatically Improves Walking for Parkinson's Disease Patients
Palm Springs, CA resident Daniel Neal had a severe motor impairment due to Parkinson’s Disease. But with the help of a new virtual reality feedback device made by MediGait, he now walks comfortably and confidently without a cane and without falling.
The GaitAid Virtual Walker by MediGait is a high tech, virtual reality pair of goggles with headphones.
This high tech device works by creating an ‘augmented reality’ – computer generated visual cues and audio feedback that dramatically improves walking speed, balance and confidence.
The usual therapy routine simply means going for a walk in a safe, normal environment.
The portable GaitAid unit hooks onto the patient's clothes. A computer processor inside the device measures walking movement. The processor provides visual and audio feedback cues to the display and to the earphones during practice walks while in training. The feedback mechanism provides rewarding stimuli for good movement making the training enjoyable.
Patients often report high motivation and enjoyment during training. People practice on any safe walking path - in the home, in their own neighborhood, or a walking trail. People see greater benefits and improvement as they walk in different environments.
People only need to use the device in training sessions. In as little as two weeks, 20 minutes of training each day resulted in significant lasting improvement in over 70 percent of the patients tested.
Clinical studies have shown that patients with Parkinson’s Disease, Multiple Sclerosis, Cerebral Palsy, and other nervous disorders that produce motor or movement impairment, are able to walk without freezing, have better balance, higher walking speeds and longer strides.
The GaitAid Virtual Walker by MediGait is a high tech, virtual reality pair of goggles with headphones.
This high tech device works by creating an ‘augmented reality’ – computer generated visual cues and audio feedback that dramatically improves walking speed, balance and confidence.
The usual therapy routine simply means going for a walk in a safe, normal environment.
The portable GaitAid unit hooks onto the patient's clothes. A computer processor inside the device measures walking movement. The processor provides visual and audio feedback cues to the display and to the earphones during practice walks while in training. The feedback mechanism provides rewarding stimuli for good movement making the training enjoyable.
Patients often report high motivation and enjoyment during training. People practice on any safe walking path - in the home, in their own neighborhood, or a walking trail. People see greater benefits and improvement as they walk in different environments.
People only need to use the device in training sessions. In as little as two weeks, 20 minutes of training each day resulted in significant lasting improvement in over 70 percent of the patients tested.
Clinical studies have shown that patients with Parkinson’s Disease, Multiple Sclerosis, Cerebral Palsy, and other nervous disorders that produce motor or movement impairment, are able to walk without freezing, have better balance, higher walking speeds and longer strides.
Monday, November 16, 2009
Stem cell treatment of Parkinson's disease
Parkinson's disease is a movement disorder and it is characterized by muscle rigidity, tremor and a slowing of physical movement. This is caused by the degenerative character of the disease, which primarily affects the central nervous system and leads to an impairment of motor and speech skills and a number of other body functions.
Parkinson's disease is usually treated with drugs designed to mask its symptoms, thus helping patients live a more normal life, for a while. But eventually, the drugs become ineffective as the disease worsens. Another treatment that is gaining in popularity is deep brain stimulation; a surgical treatment involving the implantation of a medical device called a brain pacemaker, which sends electrical impulses to specific parts of the brain.
The XCell-Center Parkinson's treatment
The XCell-Center's Parkinson's treatment differs from standard methods because, in contrast to temporarily masking symptoms with drugs or implanted devices, it is a drug-free alternative focused on affecting physical changes in the brain that can improve a patient's quality of life.
In a pilot survey, more than 90% of the Parkinson's patients treated with stem cells at the XCell-Center reported improvements.
Most Parkinson's patients are treated by lumbar puncture; injecting the stem cells into the cerebrospinal fluid which transports them up the spinal canal and into the brain. However, a new procedure, by which the stem cells are surgically implanted directly into the brain, is also available.
Lumbar puncture is an outpatient procedure that requires patients to stay in Germany 4 or 5 nights. Direct surgical implantation is an inpatient procedure that requires patients to stay in Germany for about 10 nights.
Bone Marrow Collection
On the first day, bone marrow is collected from the patient's iliac crest (hip bone) using thin-needle mini-puncture under local anesthesia. Although some pain is felt when the needle is inserted, most patients do not find the bone marrow collection procedure particularly painful. The entire procedure normally takes about 30 minutes.
Once the bone marrow collection is complete, patients may return to their hotel and go about normal activities. Patients who receive general anesthesia must lie down for a short recovery period before returning to their hotel.
Laboratory Processing
The next day, the stem cells are processed from the bone marrow in a state-of-the-art, government approved (cGMP) laboratory. In the lab, both the quantity and quality of the stem cells are measured. These cells have the potential to transform into multiple types of cells and are capable of regenerating or repairing damaged tissue.
Stem Cell Implantation
On the third day, the stem cells are implanted back into the patient by lumbar puncture or surgical implantation. Surgical implantation is performed under general anesthesia.
Lumbar Puncture
A spinal needle is inserted between L4 and L5 vertebrae and a small amount of spinal fluid is removed. A portion of that spinal fluid is mixed with the stem cell solution which is then injected into back into the patient's spinal fluid, not the spinal cord. After the stem cells have been implanted, the patient will lie down in the recovery room for a few hours before returning to his or her hotel room. The lumbar puncture procedure is performed under local anesthesia for adults and general anesthesia for children. Under normal circumstances, procedures performed under local anesthesia are not painful.
Surgical Implantation
Prior to surgery, physical and functional damage will be assessed by computer tomography (CT), magnetic resonance imaging (MRI) and positron emission tomography (PET). Once the affected brain regions have been identified and mapped, the neurosurgeon will implant the stem cells using a high tech navigation system that allows the cells to be placed with high accuracy.
All surgical implantation procedures are performed under general anesthesia.
Following Treatment
Patients who are treated by lumbar puncture are required to stay in town on the day after their procedure for general safety purposes. They may return home on the fifth day.
Surgical implantation patients may leave upon discharge from the hospital, usually on the ninth or tenth day, depending upon how their recovery progresses.
Treatment Results
• One patient reported no change in muscle spasticity, sensation, mobility or feeling of well-being after the treatment.
• Two out of 11 patients reported an overall improvement, with improved mobility (legs, arms) and/or improved strength. Some patients reported a regaining of muscle strength and/or an improvement of balance. There was some improvement of speech and/or a reduction of pain and spasms.
• Eight out of 11 patients reported a strong improvement, with a marked improvement of mobility, speech and significantly reduced pain and spasms.
• No patients reported a perceived deterioration of the quality of their life.
Costs
Stem cell implantation via lumbar puncture: 7,545 Euros (adults)
Minimally invasive surgical implantation of stem cells directly into the brain: 25,500 Euros
Evaluation Process
In order to be evaluated for treatment, patients must complete an online medical history form. Once you've completed the online medical history and submitted it, a patient relations consultant will contact you within 3 business days. He or she will assist you with the rest of the evaluation process. Upon treatment approval, your consultant will also assist you with treatment scheduling and trip preparation.
Parkinson's disease is usually treated with drugs designed to mask its symptoms, thus helping patients live a more normal life, for a while. But eventually, the drugs become ineffective as the disease worsens. Another treatment that is gaining in popularity is deep brain stimulation; a surgical treatment involving the implantation of a medical device called a brain pacemaker, which sends electrical impulses to specific parts of the brain.
The XCell-Center Parkinson's treatment
The XCell-Center's Parkinson's treatment differs from standard methods because, in contrast to temporarily masking symptoms with drugs or implanted devices, it is a drug-free alternative focused on affecting physical changes in the brain that can improve a patient's quality of life.
In a pilot survey, more than 90% of the Parkinson's patients treated with stem cells at the XCell-Center reported improvements.
Most Parkinson's patients are treated by lumbar puncture; injecting the stem cells into the cerebrospinal fluid which transports them up the spinal canal and into the brain. However, a new procedure, by which the stem cells are surgically implanted directly into the brain, is also available.
Lumbar puncture is an outpatient procedure that requires patients to stay in Germany 4 or 5 nights. Direct surgical implantation is an inpatient procedure that requires patients to stay in Germany for about 10 nights.
Bone Marrow Collection
On the first day, bone marrow is collected from the patient's iliac crest (hip bone) using thin-needle mini-puncture under local anesthesia. Although some pain is felt when the needle is inserted, most patients do not find the bone marrow collection procedure particularly painful. The entire procedure normally takes about 30 minutes.
Once the bone marrow collection is complete, patients may return to their hotel and go about normal activities. Patients who receive general anesthesia must lie down for a short recovery period before returning to their hotel.
Laboratory Processing
The next day, the stem cells are processed from the bone marrow in a state-of-the-art, government approved (cGMP) laboratory. In the lab, both the quantity and quality of the stem cells are measured. These cells have the potential to transform into multiple types of cells and are capable of regenerating or repairing damaged tissue.
Stem Cell Implantation
On the third day, the stem cells are implanted back into the patient by lumbar puncture or surgical implantation. Surgical implantation is performed under general anesthesia.
Lumbar Puncture
A spinal needle is inserted between L4 and L5 vertebrae and a small amount of spinal fluid is removed. A portion of that spinal fluid is mixed with the stem cell solution which is then injected into back into the patient's spinal fluid, not the spinal cord. After the stem cells have been implanted, the patient will lie down in the recovery room for a few hours before returning to his or her hotel room. The lumbar puncture procedure is performed under local anesthesia for adults and general anesthesia for children. Under normal circumstances, procedures performed under local anesthesia are not painful.
Surgical Implantation
Prior to surgery, physical and functional damage will be assessed by computer tomography (CT), magnetic resonance imaging (MRI) and positron emission tomography (PET). Once the affected brain regions have been identified and mapped, the neurosurgeon will implant the stem cells using a high tech navigation system that allows the cells to be placed with high accuracy.
All surgical implantation procedures are performed under general anesthesia.
Following Treatment
Patients who are treated by lumbar puncture are required to stay in town on the day after their procedure for general safety purposes. They may return home on the fifth day.
Surgical implantation patients may leave upon discharge from the hospital, usually on the ninth or tenth day, depending upon how their recovery progresses.
Treatment Results
• One patient reported no change in muscle spasticity, sensation, mobility or feeling of well-being after the treatment.
• Two out of 11 patients reported an overall improvement, with improved mobility (legs, arms) and/or improved strength. Some patients reported a regaining of muscle strength and/or an improvement of balance. There was some improvement of speech and/or a reduction of pain and spasms.
• Eight out of 11 patients reported a strong improvement, with a marked improvement of mobility, speech and significantly reduced pain and spasms.
• No patients reported a perceived deterioration of the quality of their life.
Costs
Stem cell implantation via lumbar puncture: 7,545 Euros (adults)
Minimally invasive surgical implantation of stem cells directly into the brain: 25,500 Euros
Evaluation Process
In order to be evaluated for treatment, patients must complete an online medical history form. Once you've completed the online medical history and submitted it, a patient relations consultant will contact you within 3 business days. He or she will assist you with the rest of the evaluation process. Upon treatment approval, your consultant will also assist you with treatment scheduling and trip preparation.
Sunday, November 15, 2009
Parkinson's Disease can’t slow Freddie Roach’s ascent
His head tilts to the right. When he walks, a foot drags a little behind him. His hands tremble. His voice is shaky. Freddie Roach is 49 and has been fighting Parkinson’s disease for 17 years.
There are times he looks it.
Then he gets into a ring wearing mitts to train one of his fighters, who range from L.A. ham and eggers to Manny Pacquiao, the pound-for-pound best fighter in the world who takes on Miguel Cotto for the World Boxing Organization welterweight championship Saturday at the MGM Grand Garden Arena.
Manny Pacquiao’s trainer, Freddie Roach, left, has battled Parkinson’s disease for 17 years.
It’s then that Roach moves with light feet and quick hands. He demonstrates some of the speed that made him a boxing headliner back in the day (“Crowd Pleasing Veteran,” the Camacho-Roach poster declares.)
Here’s Freddie Roach, moving and bobbing and throwing punches just the way Cotto, a man 20 years his junior, does. He is mimicking the style that he’s watched in endless scouting sessions of past fights, which is how he always prepares. He’s deft enough at it that Pacquiao hasn’t just blossomed into a superstar, but Roach has become the greatest trainer in the game today.
“Once I get in the ring, all the diseases go away,” Roach said. “I don’t shake.”
It’s a startling transformation; a demanding, athletic task seemingly conquering a physically debilitating disease. Where he slows outside the ropes, he comes to life within them, becoming the ultimate example of a man living with, rather than dying from, an ailment.
It’s left Roach confident that the end of his career is nowhere in sight. That he’ll be able to continue to work the mitts for fighters, that he’ll continue his frenetic pace – he works six days a week, often 12-hour days at his Wild Card Boxing Gym in Hollywood, Calif.
And mostly that he’ll continue to not just work championship fights, but develop championship fighters, the way he has with Pacquiao over the last eight years.
“Freddie believes he has 25 more years in his career,” said Roach’s long-time agent, Nick Khan. “We never discuss retiring.”
Roach’s strengths as a trainer are numerous, but two stand out.
One is his dedication to teaching the game. He isn’t just about preparing a fighter for a single fight (although that’s part of it). It’s about long-range construction also.
The second is that through the education process, his blunt honesty and unwavering dedication to the sport creates a trust with his fighters that can’t be shaken. Here’s a guy with a serious disease, pouring everything into them – he has no wife and few outside interests.
One feeds into the other. The more he teaches, the more they trust. The more they trust, the more teachable they become.
It is how a middle-aged guy from suburban Boston and a kid from the streets of General Santos City in the Philippines became so tight.
“The conditions in General Santos City is 50 times worse than any inner city in America,” Khan said. “Manny, coming from there, has a lot of street smarts and I think he recognized what Freddie was about immediately.”
Roach calls the day he met Pacquiao the “luckiest of my life.” At the time, few top trainers wanted anything to do with the fighter.
“Everyone turned him down because he was only 122 pounds, there wasn’t a lot of money at that weight,” Roach said. “I saw a lot of potential in Manny Pacquiao. He was just rough around the edges.
“The first day he came into the gym, the first round we wore the mitts, we connected like we knew each other for years.”
Together they built a near-perfect fighter, one that has helped make both of them rich and famous.
“He’s the master,” Pacquiao said. “I used to call him Coach Freddie, but now he’s just the master; the master of boxing.”
The master refuses to be slowed on Thursday. He isn’t in the ring but working radio row here at the MGM’s media center. This isn’t his comfort zone. After his boxing career ended, Roach was broke and needed work. He worked for a stretch as a telemarketer, which didn’t always go so well, “I’m not a great speaker so I wasn’t a great salesman.”
And that was before he got sick. Now he has to sell the fight, one radio show, one television interview, at a time. He’s become one of the most recognizable faces in the sport due to his series of appearances on HBO’s “24/7” reality show. Roach is earnest, though. He does his job, always, attacking each question like he hadn’t already answered it 100 times this week.
Roach shrugs. He’s not too proud to do what it takes. Post-fighting career he worked for a stretch as a bus boy in Vegas, the same city he once headlined cards. “I think that was humbling,” Khan said.
The one thing that time of his life taught him was financial discipline. He’s notoriously stingy. For years he lived in a spare room at the Wild Card gym. When his friends and family finally convinced him to buy a house, he paid cash for it.
“I don’t buy stuff until I can afford it,” he said. “It’s the best way, I think. The first big pay day I had was [$13,500], in six months it was gone, I was out of money. I said, ‘Where’d it go?’ I said to myself, ‘You know, I never make that mistake again in my life. I’ll always have money.’ ”
All of this rings true for the fighters. They may not know his story, but they sense his humility. They may not understand his disease, but they see the symptoms he overcomes. They may not know the full depth of his dedication, but they see enough to know how much he cares. They recognize that he’s lived it all – the training, the fights, the money, the injuries that linger (his Parkinson’s was brought on by taking too many punches).
They see the shaking hands, the dropped foot when he walks, the tilt of his head. It makes them listen more closely.
He’ll scoff at anyone who thinks the disease affects his present or will limit his future. Training fighters isn’t killing him; it’s keeping him alive and well. There’s no greater therapy, physical or mental, than round after round in the ring, “40 or 50 a day,” he estimates.
“One-hundred percent it’s helped,” he said. “The hand-eye coordination alone. I’m better now than when I was diagnosed in 1992.”
True in every imaginable way.
There are times he looks it.
Then he gets into a ring wearing mitts to train one of his fighters, who range from L.A. ham and eggers to Manny Pacquiao, the pound-for-pound best fighter in the world who takes on Miguel Cotto for the World Boxing Organization welterweight championship Saturday at the MGM Grand Garden Arena.
Manny Pacquiao’s trainer, Freddie Roach, left, has battled Parkinson’s disease for 17 years.
It’s then that Roach moves with light feet and quick hands. He demonstrates some of the speed that made him a boxing headliner back in the day (“Crowd Pleasing Veteran,” the Camacho-Roach poster declares.)
Here’s Freddie Roach, moving and bobbing and throwing punches just the way Cotto, a man 20 years his junior, does. He is mimicking the style that he’s watched in endless scouting sessions of past fights, which is how he always prepares. He’s deft enough at it that Pacquiao hasn’t just blossomed into a superstar, but Roach has become the greatest trainer in the game today.
“Once I get in the ring, all the diseases go away,” Roach said. “I don’t shake.”
It’s a startling transformation; a demanding, athletic task seemingly conquering a physically debilitating disease. Where he slows outside the ropes, he comes to life within them, becoming the ultimate example of a man living with, rather than dying from, an ailment.
It’s left Roach confident that the end of his career is nowhere in sight. That he’ll be able to continue to work the mitts for fighters, that he’ll continue his frenetic pace – he works six days a week, often 12-hour days at his Wild Card Boxing Gym in Hollywood, Calif.
And mostly that he’ll continue to not just work championship fights, but develop championship fighters, the way he has with Pacquiao over the last eight years.
“Freddie believes he has 25 more years in his career,” said Roach’s long-time agent, Nick Khan. “We never discuss retiring.”
Roach’s strengths as a trainer are numerous, but two stand out.
One is his dedication to teaching the game. He isn’t just about preparing a fighter for a single fight (although that’s part of it). It’s about long-range construction also.
The second is that through the education process, his blunt honesty and unwavering dedication to the sport creates a trust with his fighters that can’t be shaken. Here’s a guy with a serious disease, pouring everything into them – he has no wife and few outside interests.
One feeds into the other. The more he teaches, the more they trust. The more they trust, the more teachable they become.
It is how a middle-aged guy from suburban Boston and a kid from the streets of General Santos City in the Philippines became so tight.
“The conditions in General Santos City is 50 times worse than any inner city in America,” Khan said. “Manny, coming from there, has a lot of street smarts and I think he recognized what Freddie was about immediately.”
Roach calls the day he met Pacquiao the “luckiest of my life.” At the time, few top trainers wanted anything to do with the fighter.
“Everyone turned him down because he was only 122 pounds, there wasn’t a lot of money at that weight,” Roach said. “I saw a lot of potential in Manny Pacquiao. He was just rough around the edges.
“The first day he came into the gym, the first round we wore the mitts, we connected like we knew each other for years.”
Together they built a near-perfect fighter, one that has helped make both of them rich and famous.
“He’s the master,” Pacquiao said. “I used to call him Coach Freddie, but now he’s just the master; the master of boxing.”
The master refuses to be slowed on Thursday. He isn’t in the ring but working radio row here at the MGM’s media center. This isn’t his comfort zone. After his boxing career ended, Roach was broke and needed work. He worked for a stretch as a telemarketer, which didn’t always go so well, “I’m not a great speaker so I wasn’t a great salesman.”
And that was before he got sick. Now he has to sell the fight, one radio show, one television interview, at a time. He’s become one of the most recognizable faces in the sport due to his series of appearances on HBO’s “24/7” reality show. Roach is earnest, though. He does his job, always, attacking each question like he hadn’t already answered it 100 times this week.
Roach shrugs. He’s not too proud to do what it takes. Post-fighting career he worked for a stretch as a bus boy in Vegas, the same city he once headlined cards. “I think that was humbling,” Khan said.
The one thing that time of his life taught him was financial discipline. He’s notoriously stingy. For years he lived in a spare room at the Wild Card gym. When his friends and family finally convinced him to buy a house, he paid cash for it.
“I don’t buy stuff until I can afford it,” he said. “It’s the best way, I think. The first big pay day I had was [$13,500], in six months it was gone, I was out of money. I said, ‘Where’d it go?’ I said to myself, ‘You know, I never make that mistake again in my life. I’ll always have money.’ ”
All of this rings true for the fighters. They may not know his story, but they sense his humility. They may not understand his disease, but they see the symptoms he overcomes. They may not know the full depth of his dedication, but they see enough to know how much he cares. They recognize that he’s lived it all – the training, the fights, the money, the injuries that linger (his Parkinson’s was brought on by taking too many punches).
They see the shaking hands, the dropped foot when he walks, the tilt of his head. It makes them listen more closely.
He’ll scoff at anyone who thinks the disease affects his present or will limit his future. Training fighters isn’t killing him; it’s keeping him alive and well. There’s no greater therapy, physical or mental, than round after round in the ring, “40 or 50 a day,” he estimates.
“One-hundred percent it’s helped,” he said. “The hand-eye coordination alone. I’m better now than when I was diagnosed in 1992.”
True in every imaginable way.
New research to halt Parkinson's, Michael J. Fox remains hopeful
By Tom Blackwell
A decade ago, Michael J. Fox predicted Parkinson's -- the disease that has afflicted him for 17 years -- would be cured in 10 years. No such breakthrough is close, but new research at the University of Windsor could halt its advance.
Each time University of Windsor graduate student Katie Facecchia sees the B.C-raised actor on television, talking about his life-and-death battle with Parkinson's disease, she "can't help but think -- just hang on, there'll be something soon."
Ms. Facecchia is part of a team of researchers from the school's biochemistry and psychology departments, led by Prof. Siyaram Pandey, who believe they have made a research breakthrough that laboratory tests have proven halt the advance of Parkinson's.
Prof. Pandey said the treatment is a water-soluble formulation of the natural chemical compound - coenzyme Q10 - that stops further degeneration of neurons in the brains of lab rats.
The currently non-curable neurodegenerative disease is caused by the death of brain cells that produce dopamine, a chemical that carries signals between the nerves in the brain that control movement.
The "Co-Q10" compound cannot reverse the damage, cautioned Prof. Pandey, but he said it can halt its progression.
"As the disease progresses, the neurons die at a faster rate," said Prof. Pandey, "Usually, by the time it's diagnosed, 50 per cent of the neurons are gone. The only treatment now is for the symptoms, but the dosage has to always be increased, because the neurons continue to die. If we can protect those neurons that are left over, it could lead to a normal life."
He said the research so far has "shown amazing results . . . the near-complete protection of brain cells."
The findings have been published in the academic journal BMC Neuroscience, and the team has begun collaborating with a pharmaceutical company based in New Jersey, Zymes LLC.
Prof. Pandey said he hopes their research will proceed to clinical testing soon.
"We're still at the pre-clinical stage," he said. "But the results are promising."
Mr. Fox officially launched his research foundation in Canada on Thursday, saying he still wakes up every day believing the illness will be beaten during his lifetime, but now recognizes the advances will come in small, often unspectacular steps.
"I have learned that 99% of progress is failure," said the 47-year-old former star of TV and movies.
"You're not so much proving things as disproving things, and that is a fundamental part of it," he said. "The brain is like space, like the depths of the ocean: it's this frontier we just don't understand ... I'd love to get the answers, but if we can find the right questions, that's just as important for me and just as exciting."
He later suggested that scientists will have figured out the disease within 30 or 40 years, "if not a lot sooner," but said he was not driven by a desire to find a cure for himself.
"People have a hard time believing this - [but] I sometimes forget that I'm even affected by this," he said. "I want to enable and empower those who have the intelligence and the knowledge and the wherewithal to solve the problem ."
Throughout a 20-minute news-conference appearance in Toronto, Mr. Fox swayed back and forth under the disorder's influence, his hands clenching the table in front of him and his voice faltering at times, but kept his audience rapt with often-witty responses.
The Michael J. Fox Foundation - which has dispersed $150-million in the United States, Canada and elsewhere since its founding in 2000 - has just been given charitable status in Canada, a fact that Mr. Fox said meant a lot to him as a Canadian.
He and the foundation's CEO, Katie Hood, heaped praise on the event's co-hosts, the McEwan Centre for Regenerative Medicine - cutting-edge stem-cell researchers - and Toronto Western, which Ms. Hood called one of the world's hotbeds of Parkinson's science.
The Fox foundation itself has earned positive reviews for its focused, aggressive approach to funding research, designed to ensure scientists share information and quickly pounce on any breakthroughs.
The actor, who first found fame in the 1980s NBC series Family Ties, and later in movies such as Back to the Future, played a much different role in recent years as a high-profile opponent of George W. Bush's decision to bar U.S. government funding of research on embryonic stem cells.
That funding decision has since been overturned by Barack Obama, who succeeded Mr. Bush as president. And scientists at Thursday's event suggested stem cells - with their ability to convert into other types of cells - may help them understand how Parkinson's affects the brain, but are unlikely to be developed into a "magical" cure.
Meanwhile, Mr. Fox dismissed complaints that his research-focused charity will sap donor dollars from the Parkinson's Society, a Canadian group dedicated to supporting and advocating for the country's 100,000 patients, stressing that the foundation is not launching an "invasion" of this country.
"I really feel that a rising tide lifts all boats," he said. "I think in the 10 years we've been doing this, we've raised Parkinson's awareness to the point where most organizations and most people endeavouring to help the Parkinson's community are getting more attention than they did."
A decade ago, Michael J. Fox predicted Parkinson's -- the disease that has afflicted him for 17 years -- would be cured in 10 years. No such breakthrough is close, but new research at the University of Windsor could halt its advance.
Each time University of Windsor graduate student Katie Facecchia sees the B.C-raised actor on television, talking about his life-and-death battle with Parkinson's disease, she "can't help but think -- just hang on, there'll be something soon."
Ms. Facecchia is part of a team of researchers from the school's biochemistry and psychology departments, led by Prof. Siyaram Pandey, who believe they have made a research breakthrough that laboratory tests have proven halt the advance of Parkinson's.
Prof. Pandey said the treatment is a water-soluble formulation of the natural chemical compound - coenzyme Q10 - that stops further degeneration of neurons in the brains of lab rats.
The currently non-curable neurodegenerative disease is caused by the death of brain cells that produce dopamine, a chemical that carries signals between the nerves in the brain that control movement.
The "Co-Q10" compound cannot reverse the damage, cautioned Prof. Pandey, but he said it can halt its progression.
"As the disease progresses, the neurons die at a faster rate," said Prof. Pandey, "Usually, by the time it's diagnosed, 50 per cent of the neurons are gone. The only treatment now is for the symptoms, but the dosage has to always be increased, because the neurons continue to die. If we can protect those neurons that are left over, it could lead to a normal life."
He said the research so far has "shown amazing results . . . the near-complete protection of brain cells."
The findings have been published in the academic journal BMC Neuroscience, and the team has begun collaborating with a pharmaceutical company based in New Jersey, Zymes LLC.
Prof. Pandey said he hopes their research will proceed to clinical testing soon.
"We're still at the pre-clinical stage," he said. "But the results are promising."
Mr. Fox officially launched his research foundation in Canada on Thursday, saying he still wakes up every day believing the illness will be beaten during his lifetime, but now recognizes the advances will come in small, often unspectacular steps.
"I have learned that 99% of progress is failure," said the 47-year-old former star of TV and movies.
"You're not so much proving things as disproving things, and that is a fundamental part of it," he said. "The brain is like space, like the depths of the ocean: it's this frontier we just don't understand ... I'd love to get the answers, but if we can find the right questions, that's just as important for me and just as exciting."
He later suggested that scientists will have figured out the disease within 30 or 40 years, "if not a lot sooner," but said he was not driven by a desire to find a cure for himself.
"People have a hard time believing this - [but] I sometimes forget that I'm even affected by this," he said. "I want to enable and empower those who have the intelligence and the knowledge and the wherewithal to solve the problem ."
Throughout a 20-minute news-conference appearance in Toronto, Mr. Fox swayed back and forth under the disorder's influence, his hands clenching the table in front of him and his voice faltering at times, but kept his audience rapt with often-witty responses.
The Michael J. Fox Foundation - which has dispersed $150-million in the United States, Canada and elsewhere since its founding in 2000 - has just been given charitable status in Canada, a fact that Mr. Fox said meant a lot to him as a Canadian.
He and the foundation's CEO, Katie Hood, heaped praise on the event's co-hosts, the McEwan Centre for Regenerative Medicine - cutting-edge stem-cell researchers - and Toronto Western, which Ms. Hood called one of the world's hotbeds of Parkinson's science.
The Fox foundation itself has earned positive reviews for its focused, aggressive approach to funding research, designed to ensure scientists share information and quickly pounce on any breakthroughs.
The actor, who first found fame in the 1980s NBC series Family Ties, and later in movies such as Back to the Future, played a much different role in recent years as a high-profile opponent of George W. Bush's decision to bar U.S. government funding of research on embryonic stem cells.
That funding decision has since been overturned by Barack Obama, who succeeded Mr. Bush as president. And scientists at Thursday's event suggested stem cells - with their ability to convert into other types of cells - may help them understand how Parkinson's affects the brain, but are unlikely to be developed into a "magical" cure.
Meanwhile, Mr. Fox dismissed complaints that his research-focused charity will sap donor dollars from the Parkinson's Society, a Canadian group dedicated to supporting and advocating for the country's 100,000 patients, stressing that the foundation is not launching an "invasion" of this country.
"I really feel that a rising tide lifts all boats," he said. "I think in the 10 years we've been doing this, we've raised Parkinson's awareness to the point where most organizations and most people endeavouring to help the Parkinson's community are getting more attention than they did."
Famous celebrities afflicted with Parkinson's Disease
One of the famous celebrities suffering from Parkinson's disease is the Edmonton native Michael J. Fox. He used his fame as an actor to take a lead role in the fight against Parkinson's disease. He has been named the most influential Canadian expatriate.
Fox, 48,was chosen in a contest and vote held by the Canadian Expat Association, earning the nod ahead of such other Canadian luminaries as hockey star Wayne Gretzky and rock music legend Neil Young.
The association cited Fox for "the bravery of his personal fight against Parkinson's disease and the scope and effectiveness of his global campaign to find a cure."
Fox rose to fame in the 1980s, starring in movies like the Back to the Future series and Teen Wolf, and the TV sitcoms Family Ties and Spin City. In 1991, he was found to have Parkinson's disease, a disorder that attacks the central nervous system.
Another famous celebrity is Reverend Billy Graham, who is the pastor to presidents. He celebrated his 91st birthday last Saturday.He visited with family at his home in Montreat, just outside Asheville.
He's not given interviews, but his evangelistic association issued a news release quoting him as saying that "his heart is filled with gratitude to the Lord for all that He has done for him, and for all the prayers from so many people over the years."
The Reverend Graham has Parkinson's Disease, his hearing and vision have weakened, and he's suffered several falls recently.
But his group says he has a strong heart and a clear mind.
Fox, 48,was chosen in a contest and vote held by the Canadian Expat Association, earning the nod ahead of such other Canadian luminaries as hockey star Wayne Gretzky and rock music legend Neil Young.
The association cited Fox for "the bravery of his personal fight against Parkinson's disease and the scope and effectiveness of his global campaign to find a cure."
Fox rose to fame in the 1980s, starring in movies like the Back to the Future series and Teen Wolf, and the TV sitcoms Family Ties and Spin City. In 1991, he was found to have Parkinson's disease, a disorder that attacks the central nervous system.
Another famous celebrity is Reverend Billy Graham, who is the pastor to presidents. He celebrated his 91st birthday last Saturday.He visited with family at his home in Montreat, just outside Asheville.
He's not given interviews, but his evangelistic association issued a news release quoting him as saying that "his heart is filled with gratitude to the Lord for all that He has done for him, and for all the prayers from so many people over the years."
The Reverend Graham has Parkinson's Disease, his hearing and vision have weakened, and he's suffered several falls recently.
But his group says he has a strong heart and a clear mind.
An Overview of Parkinson's disease
Parkinson's disease involves a breakdown of the nerve cells in the motor area of the brain. As the cells break down, there is a shortage of dopamine. Dopamine is a neurotransmitter, or chemical that carries messages to the body. When there is a shortage of dopamine, the messages that regulate movement aren't sent properly.
What are the causes and risks of the disease?
The cause of Parkinson's disease is not known. There may be a hereditary tendency to the disease that is worsened by factors in the environment. Some people with Parkinson's disease have an abnormality on chromosome 4.
There is evidence that Parkinson's disease may be caused by a defect in the body's normal methods for breaking down protein. This defect allows debris to build up in the brain and damage brain cells. The defect may be caused by one or more of the following factors:
- an environmental toxin, such as pesticides
- a gene defect, such as the abnormality on chromosome 4
- a viral infection
The symptoms of Parkinson's disease usually begin at about age 60. It is most common in people in their 70s and 80s. Parkinson's disease is twice as frequent in men than in women. Preliminary research suggests that estrogen, a female hormone, may protect against Parkinson's disease.
What are the treatments for the disease?
There is no cure for Parkinson's disease. The major goal of treatment is to prevent deterioration. Symptoms can usually be well controlled for several years in the early stages of the disease.
Early in the disease, medications are used. One of the most common medicines is a combination of levodopa and carbidopa. Although this combination is effective, it tends to work less and less over time. Other medications used to treat Parkinson's disease include the following:
- amantadine
- pergolide
- pramipexole
- ropinirole
- selegiline
Another treatment is surgery. Surgery can include removal of a tiny part of the brain. Another approach is deep brain stimulation with electricity.
People may need other treatments to deal with the many problems associated with the disease. If dementia is present, close monitoring may be needed. Treatment with antidepressants, antipsychotic medications, or sedatives can also help relieve some symptoms. Physical and occupational therapy, as well as speech therapy may help. The use of a service dog and in-home care may be needed.
Other medications may be used in late-stage Parkinson's disease to control symptoms. Medicines can be helpful when there are problems with bladder control, for example. Men with Parkinson's disease may be given medications for erectile dysfunction.
Researchers continue to test new treatments for Parkinson's disease. Implanting fetal cells into the brain of people with Parkinson's disease was recently tried and failed. In some people, the treatment caused severe problems with movement.
What are the side effects of the treatments?
Medications used to treat Parkinson's disease may cause abnormal body movements. Other side effects include nausea, drowsiness, confusion, and dry mouth.
Surgery may cause difficulty with speech or paralysis on one side of the body.
Deep brain stimulation usually requires more than one operation. There is also a risk of bleeding, infection, or allergic reaction to anesthesia.
What happens after treatment for the disease?
People with Parkinson's disease need treatment for life.
How is the disease monitored?
A family member or caregiver is important when it comes to monitoring Parkinson's disease. They can give the healthcare provider day-to-day input on benefits and side effects of treatment. Any new or worsening symptoms should be reported to the healthcare provider.
What are the causes and risks of the disease?
The cause of Parkinson's disease is not known. There may be a hereditary tendency to the disease that is worsened by factors in the environment. Some people with Parkinson's disease have an abnormality on chromosome 4.
There is evidence that Parkinson's disease may be caused by a defect in the body's normal methods for breaking down protein. This defect allows debris to build up in the brain and damage brain cells. The defect may be caused by one or more of the following factors:
- an environmental toxin, such as pesticides
- a gene defect, such as the abnormality on chromosome 4
- a viral infection
The symptoms of Parkinson's disease usually begin at about age 60. It is most common in people in their 70s and 80s. Parkinson's disease is twice as frequent in men than in women. Preliminary research suggests that estrogen, a female hormone, may protect against Parkinson's disease.
What are the treatments for the disease?
There is no cure for Parkinson's disease. The major goal of treatment is to prevent deterioration. Symptoms can usually be well controlled for several years in the early stages of the disease.
Early in the disease, medications are used. One of the most common medicines is a combination of levodopa and carbidopa. Although this combination is effective, it tends to work less and less over time. Other medications used to treat Parkinson's disease include the following:
- amantadine
- pergolide
- pramipexole
- ropinirole
- selegiline
Another treatment is surgery. Surgery can include removal of a tiny part of the brain. Another approach is deep brain stimulation with electricity.
People may need other treatments to deal with the many problems associated with the disease. If dementia is present, close monitoring may be needed. Treatment with antidepressants, antipsychotic medications, or sedatives can also help relieve some symptoms. Physical and occupational therapy, as well as speech therapy may help. The use of a service dog and in-home care may be needed.
Other medications may be used in late-stage Parkinson's disease to control symptoms. Medicines can be helpful when there are problems with bladder control, for example. Men with Parkinson's disease may be given medications for erectile dysfunction.
Researchers continue to test new treatments for Parkinson's disease. Implanting fetal cells into the brain of people with Parkinson's disease was recently tried and failed. In some people, the treatment caused severe problems with movement.
What are the side effects of the treatments?
Medications used to treat Parkinson's disease may cause abnormal body movements. Other side effects include nausea, drowsiness, confusion, and dry mouth.
Surgery may cause difficulty with speech or paralysis on one side of the body.
Deep brain stimulation usually requires more than one operation. There is also a risk of bleeding, infection, or allergic reaction to anesthesia.
What happens after treatment for the disease?
People with Parkinson's disease need treatment for life.
How is the disease monitored?
A family member or caregiver is important when it comes to monitoring Parkinson's disease. They can give the healthcare provider day-to-day input on benefits and side effects of treatment. Any new or worsening symptoms should be reported to the healthcare provider.
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